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Article: 2010: the Year in ME/CFS Research - A Pre- International Workshop Overview Pt I

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 1, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    Being thoroughly stupid myself Cort, is this saying that "behaviour" studies have outstripped all others - and will the current K de M/Mikovits/Chia findings with their soon to be made public "aetiology" of the disease be included in the Workshop ? That should be the "biggie" I see on post 844 antiretroviral trial by Sushi. XMRV and particular co-morbids - they are bringing the pieces together now. Thanks for your big piece of research here - it will surely aid many to see.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Can we get links to these studies, i would really like to see the sleep ones as well as the others.

    thanks!!!
     
  4. Persimmon

    Persimmon Senior Member

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    Ditto

    Obviously that'd take a lot of work, but it would make a great reference.
     
  5. jace

    jace Off the fence

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  6. Cort

    Cort Phoenix Rising Founder

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    There will be links to them as I go through the overviews.
     
  7. Cort

    Cort Phoenix Rising Founder

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    I would say that if you look at every subject on its own - yes, there is more study on behavioural issues than any other single subject. That said, there is much more study being done on the biological causes of CFS than on psychology.

    I really don't know what's going to be in that workshop....it's coming up soon :)
     
  8. CBS

    CBS Senior Member

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    There's no way that I would describe "General Behavioral," "CBT/GET," or "Physical therapy" as Treatment. In their best forms, these are coping mechanisms, at their worst they are abuse.

    That leaves us with a total of nine "Treatment" studies.

     
  9. urbantravels

    urbantravels disjecta membra

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    I'd disagree on physical therapy - physical therapy has been one of the treatments that has helped me the most. But then, I have an awesome physical therapist who knows what he is doing, follows the "energy envelope" strategy and is super careful never to let me overexert myself.

    The Pacific Fatigue Lab people are physical therapists too, you know, and they are involved in efforts to get the word out to more physical therapists about how to properly treat CFS patients. I know they gave a big presentation at some physical therapy conference in February because they were talking about it when I was there in January.

    And what's so illegitimate about pacing? Are you drawing a distinction in which pacing and physical therapy are not "treatments" but pharmaceutical interventions are?

    Given that none of the treatments we currently have available to us are cures, all we have are symptomatic treatments, but they're still treatments (not all treatments are cures) and the good ones still can make a heck of a lot of difference to our quality of life.
     
  10. CBS

    CBS Senior Member

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    I see physical therapy as a way of minimizing losses - minimizing the impact of whatever is at the heart of this illness and that includes bolstering our bodies own defenses - in some manner a substitution for the healthful effects of the physical activity in which I would otherwise be engaged. I see counseling as doing the same thing on an emotional level. But I don't see either as a "treatment" specific for ME/CFS any more or less than I would view them as a treatment for cancer or MS.

    I have also seen that as this disease progresses, mild physical exertion, such as one might experience with PT comes at escalating costs with regards to neurological complications.

    ETA: I'd be a lot more comfortable viewing these as "adjunctive" therapies.
     
  11. urbantravels

    urbantravels disjecta membra

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    So then you don't think the Pacific Fatigue Laboratory's most recent research about improving (not just maintaining) function via exercise below the anaerobic threshold has any usefulness to us at all?

    On the contrary, I would disagree and say that this is *exactly* the sort of thing that should be studied in the area of physical therapy and exercise-based treatments, and very rigorously and carefully (i.e. not with PACE trial bogosity). Because if we get just generic "physical therapy" or "exercise" thrown at us as treatments, the effects can indeed be very detrimental; for ME/CFS patients, these treatments should be administered as carefully as any prescription drug - probably more carefully than most prescription drugs actually are administered! High potential for toxicity if administered wrongly; but good potential for benefit if administered with due precautions.

    By the way, I have a few friends with MS who would disagree with you strongly about the value of targeted PT as a treatment for them. Their needs are different than ours, but equally specialized.

    None of the above, of course, is an argument for diverting research dollars from other lines of research in favor of just exercise physiology-based treatments. Of COURSE we all want to grow the pie, not fight over the tiny slivers available to each research area.
     
  12. CBS

    CBS Senior Member

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    No, that's not at all what I said.

    Exactly.

    ETA: This from the WebMD page on MS (http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-physical-therapy)

     
  13. Dolphin

    Dolphin Senior Member

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    Thanks Cort.
    I found it very interesting when you did this in the past. IIRC, you did one a few years back that looked back over the previous 5 (?) years. I have quoted it a bit when people have said that there was 4000/5000 studies showing biological abnormalities - the number of PubMed listings is not the same as the number of papers that found biological abnormalities. And then as you point out above, the abnormalities that have been found are spread over a diverse area. So any one field can have a relatively small amount of studies done in it in any one year (as your list above shows) or indeed ever.
     
  14. urbantravels

    urbantravels disjecta membra

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    Oh no, CBS, we must never fight! I don't think we are talking about anything radically different, we're just having a semantic conflict.

    I mean, my pain pills don't do anything to address the root causes of my CFS either, but I am MUCH more functional when I can take them as needed. That's a symptomatic treatment too, but a valuable one to my quality of life.

    It's a shame we have been abused in the past by so many potentially useful things. Both my PT and my shrink are great, and both treat me and my disease with respect. If the goal of medicine really is the well-being of the patient, then both these folks should be role models; interesting to note that neither has M.D. after their name.

    By contrast I get very annoyed when doctors who know nothing about CFS try to give me "coping" advice, both because they tend to be clueless about it and because I don't go to doctors for "coping" advice, I want them to hand over some useful medical care or else get out of the way.
     
  15. Cort

    Cort Phoenix Rising Founder

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    Right and when you look at the number of truly meaningful studies; ie ones that are well designed with sufficient subjects on important topics; ie that really will be noticed and have a chance to make a more or less immediate difference - the number drops drastically. You can throw alot of studies but unless they are designed well -they are not going to perk up the ears of the rest of the research community. You can bet that NIH funded studies, for instance, are well designed - but the NIH only funds a couple of new studies a year at best. Those types of studies are our best shot at making movement in this disorder. ( The strong design of the WPI XMRV was why it elicited so much interest when the discovery of XMRV in prostate tissues did not. )
     
  16. kurt

    kurt Senior Member

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    What if someone were to tabulate the number of MEANINGFUL studies for CFS? That might be biological studies not involved with psychological or behavioral interventions or theories. Also, should only include studies that tell us something useful towards diagnosis and treatment. That might be illuminating, the 'several thousand' studies might reduce to a few hundred that are actually useful to patients and clinicians.
     
  17. Dolphin

    Dolphin Senior Member

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    That would be interesting.

    However, my point was that there aren't 4000/5000 studies of whatever quality showing abnormalities. If one puts "chronic fatigue syndrome" into PubMed, one gets 4387 results at this moment in time.

    However, there aren't 4387 different studies involving CFS patients.
    - A percentage are papers on other topics where CFS just gets a mention somewhere (i.e. exercise has been work in CFS also or whatever claim they want to make)

    - A percentage are review papers - collating the data out there.

    - Hypothesis papers - maybe a bit like review papers - putting a theory together referencing pre-existing CFS research and research from other areas.

    - A percentage are editorials - a bit like review papers

    - Then there are letters to the editors (just talking about the type that don't have new data - they're replying to other papers - there can be some letters to the editor that do include new data).

    -
    -----
    Then if one is looking at the claim that there are 4000/5000 or whatever papers that have shown biological abnormalities, one shouldn't count "paper"/nonbiomedical research - often used in epidemiology, for example. Also an awful lot of psychological and psychiatric research is paper research including some intervention studies (no biological outcome measures).

    ----
    There may be other exclusions that aren't occuring to me off the top of my head.

    I don't know what the figure one is left with then.
     

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